Below is a link to a paper from The Ontario Caregiver Organization on COVID-19 precautions caregivers need to take:
Below is a link to a paper providing advice on COVID-19 from the Ontario Neurodegenerative Disease Research Initiative:
Over 25 meetings between #ALS advocates and MPs, Senators and their staff. We are grateful to and inspired by the people living with ALS, caregivers, family members, researchers, clinicians and volunteers who came together in Ottawa to bring forward the diverse voices of Canadians affected by this devastating disease. Together we are stronger in our advocacy for substantial changes to Canada’s drug access pathway and dedicated ALS research funding.
On March 10, 2020 I was included in a group of community advocates who called on the Canadian government to acknowledge and support the devastating impact ALS has on Canadians.
It was an honour to be a voice for the ALS community on Parliament Hill. We met with MPs to call on the government to make substantial changes to Canada's drug access process and to fund ALS research that will lead to effective treatments.
We advocated for the government to help Canadians access innovative therapies faster, and to be a partner in funding dedicated ALS research such as CAPTURE ALS.
We asked our MPs to join the ALS caucus as well as to write a letter to the Minister of Health in support of these asks.
This same week Parliament was shut down due to Covid-19. I implored our dignitaries to not forget about those of us who are dying from ALS when we get through this pandemic. If the Canadian government cares about the health and safety of Canadians why are those of us living with ALS left behind, without any government support for the ALS Society of Canada?
Check out all photos on the Gallery Page of my Blog.
Community members, caregivers, researchers, clinicians, volunteers and people living with ALS, came together for a productive day of advocacy training on how to best engage with Parliamentarians in Ottawa. We brought forward the experiences of our community to educate Members of Parliament and Senators from all parties on the urgent needs of Canadians living with ALS. We called for reform to Canada’s drug access pathway to ensure that people living with ALS have access to proven ALS therapies faster, as well as the need to invest in dedicated ALS research that will contribute to the discovery of new and effective treatments.
The ALS community was honoured in the House of Commons on March 10th by our long-time friend MP Francis Drouin. We’re grateful to MP Drouin for delivering a Members Statement that thanked many ALS advocates (I got a shout-out in Parliament!) for their important work in bringing forward the voices of the ALS community to Parliamentarians. (He begins in French and then switches to English).
On March 10th, MP Matt Jeneroux welcomed our community to Parliament Hill and spoke about the important perspectives of Canada’s ALS community in the House of Commons. He highlighted the urgent need for the government to better support people and families affected by ALS and to work towards #aFutureWithoutALS.
Carol Jean Skinner (née Sharman)